This blog is intended to Create Positive Effective Change! Erin Havel is a Leukemia and AVM survivor, the author of The Malformation of Health Care book now available on Amazon http://www.amazon.com/dp/B009V37CXU and a Huffington Post Blogger see those postings here: http://www.huffingtonpost.com/erin-havel/

Tuesday, February 14, 2012

I would like to start out by saying people who scam systems that are set in place to help others really stink. I know these people exist, and I know they are the reason companies running services to help others are suspicious of everyone.

HOWEVER, I am not one of those people. After the first time the long term disability company secretly video taped me walking my dogs, came into my home, and barraged me with questions for 3 hours, I thought I had established that fact. They sent me paperwork, after all, saying I was indeed not scamming the system.

After that experience, (3 years ago now) thanks to all the medication I was on, I became paranoid that I was being watched at all times and wound up a recluse for about a year. I was depressed from being sick anyway, and with the added anxiety of that situation, and heavy doses of medications--I didn't have a chance at handling the situation well at all.

So you can imagine my stress level today when they called again asking for another "meeting" to "discuss" my claim.

I have leukemia, and I'm under doctors supervision for a vascular malformation.

My doctor and I fill out the forms the disability company asks for every 6 months. In the last paperwork we filled out, my doctor (rightly so) said she felt I was improving. I am. My vascular malformation is being watched with MRI's instead of actively forcing me into hospitalizations once every month.

The leukemia is chronic, however, and while I am tolerating the medication as well as can be expected... I am on a daily chemotherapy pill... and I will be for the rest of my life... unless researchers discover a cure. This comes with its own set of side effects-memory loss and retention issues, extreme fatigue, weight gain, edema, nausea, vision problems, muscle cramps, bone pain, (and entirely too many others to mention)---take your pick of the laundry list.... it's chemotherapy without an "end" date.

So there's that.

Then let's talk about the cost of that particular drug. $6,700.00 (i'll round down) per month. No, there's no stress there about making sure I'm covered for that... (sarcasm)

So here comes this company that gives me about $100 a month to help me get by (thanks to a policy I had at my last job) doing secret video surveillance on me yet again.

I asked the guy when he insisted on meeting in my home instead of a public place (because he didn't want me to feel uncomfortable discussing "personal information") if this was along the same lines as the last interrogation. I explained to him how the medications mixed with the anxiety that situation caused me put me into a deep depression where I didn't leave my house for a year... and if he was going to show me a video of me walking my dog as proof of why I no longer qualify for my policy... I would need to have an additional person with me because I emotionally can not handle going through that again.

He said it was indeed similar and he was shocked to hear I'd been through it before. He would check with his supervisor to see if this was a mistake.

How walking my dogs incriminates me, I'm not quite sure.... does leukemia mean a person isn't allowed to walk for 15 minutes a day when they're feeling able? to try and maintain some semblance of health outside of the disease?

I wonder if they read this blog... and if they think the hour I spend writing it demonstrates my ability to teach science to 6th graders 5 days a week for 8 hours a day.

My current question is should I have an attorney with me at this meeting? And---at what point does this become harassment?

You're probably thinking "Erin, it's a hundred dollars a month---just let it go so you don't have to deal with these jerks." My immediate reaction is to agree. Then the social justice aspect raises up in my stomach and says "If you roll over and play dead, they'll hurt other people who aren't as lucky to have support as you are."

Friday, February 3, 2012

Today I read an article on the CBS News website about Rick Santorum (one of the Republican presidential hopefuls for 2012) and his opinion on drug costs. Maybe it's because my medication for CML has gone up in price from $3,000.00-$6,758.00 (monthly) over the last five years, but I think the man is out of touch with what is going on. The free market is a wonderful concept. It encourages competition, innovation, and some amazing ways to transform our society. Here's the loophole; The free market when it is not corrupt is a wonderful tool, however, greed and the free market appear to have become friends. Whenever a system becomes corrupt, no matter how good of a concept it may seem, it loses it's positive effect.

I actually agree with Mr. Santorum's thought about encouraging companies to develop these medications through incentives. However, what is the point of developing medications to help people if the cost is too much for them to afford. Wouldn't you think developing a drug that saves millions of peoples lives would be the largest benefit? Think about the ego boost! Yes money is important, but look at Jonas Salk who invented the polio vaccine--- he didn't take the kind of money these drug companies are demanding.... and I guarantee he felt satisfied with himself at the end of his life. Money isn't everything.

Many will argue there are groups that subsidize the costs of these highly expensive medications. This is true. How scary is it though to not be able to rely on your own income to save your life? Non-profit organizations that help with medication costs often times go out of business, or don't receive enough donations in a year, or lose grants. There's no guarantee those companies will be there every day for the rest of your life should you need their assistance.

I just think we have to get real about health care in this country. We don't have to go the route of Canada, (because I hear complaints about that system every time the change in health care structure for the U.S. comes up) but don't you think there must be a better way to handle all of this?

Thursday, February 2, 2012

So I wrote the following as a letter to the editor of the Seattle Times:

February 4th is World Cancer Day. As a person diagnosed with leukemia, ten days after my 30th birthday, I feel the desire to use this occasion to raise awareness. The young adult cancer population, ages 15-39, is surprisingly large. According to the Abramson Cancer Center, each year approximately 70,000 young adults are diagnosed with cancer. The truly interesting fact about this group though, is that its mortality rates have not improved over the last 30 years. Older cancer patients and childhood cancer patients mortality rates have improved significantly, while young adults mortality rates have remained the same. There are many thoughts on why this disparity exists. Often times young adults believe themselves to be immune to such heavy diagnosis, and therefore don't recognize early warning signs. Some young adults do not have solid job positions that offer health insurance, so they don't go to the doctor. Also, according to the Abramson Cancer Center, young adults dealing with cancer are less likely to join clinical trials. Therefore, information on how best to discover and treat these heavy diagnosis within the young adult population is studied less.

If you know of anyone within the young adult cancer demographic who needs assistance, there are a few groups who work specifically with this population. I would encourage you to refer them to the "I'm Too Young For This Foundation" (http://stupidcancer.com/). Every year they have a weekend summit in different parts of the country where young adults with cancer meet eachother and attend seminars specifically designed towards their specific population. This year the summit will be in Las Vegas, NV from March 30-April 1st. For more information please go to http://omgsummit.org/2012/

The more our community becomes aware of young adults with cancer, the more we can do to help.

Wednesday, February 1, 2012

Hello everyone, My name is Erin Havel and I'm in the process of having a book edited about my experience with health care in America. It's title is The Malformation of Health Care. I was born with a vascular malformation (AVM/VM) and ten days after I turned 30, I was also diagnosed with chronic myelogenous leukemia (CML). Health care is a huge part of my life and I think too often those of us who require care go through more of a battle to receive that care than fight the ailment.

This blog will contain pieces of my book, information I'm finding in the news regarding health care, and hopefully positive ideas on how to help others going through struggles within our current system.

I have a Facebook group you're welcome to join if you're interested (http://www.facebook.com/groups/352009698155992/)